Very important!

Bulletin from the cause: The Neuroendocrineimmune (NEI) Center
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Posted By: Marly Silverman
To: Members in The Neuroendocrineimmune (NEI) Center
IT IS CRUCIAL THAT YOU VOTE NOW FOR PANDORA ON CHASE COMMUNITY GIVING - WE ARE THE ONLY ORGANIZATION FROM OUR OVERALL COMMUNITY THAT HAS MADE TO THE TOP 200
July 7, 2010

Dear Members,
Patient Alliance for Neuroendocrineimmune... Disorders Organization for Research & Advocacy, Inc. (this is how you have to search for us if you need.) DBA as P.A.N.D.O.R.A. is holding a very good ranking on Chase Community Giving. We are the only organization from within our overall Neuroendocrineimmune Disorders (NEIDs) Community that has made to the top 200 ranking now at number 114. You can vote at http://apps.facebook.com/chasecommu...sorders-org-for-resech-amp-adv-inc?m=e9b4807e

We have accomplished this amazing task with the support of individuals like Frank OpDeBeeck,who created a tutorial video to get us on the top 200 and many more, including Phil Campos, who produced the video for the contest, Andrea Martel, Sus Cue-Sagman, Michelle Lonchar, Gaston Gingues, Andrea Pring, Pat LaRosa, Cort Johnson, Blair Miller, Martina M Punktchen, Claire Randall, Nancy K Jay, Thomas Hennessey, Keith Baker, and so many more. Our board members on Facebook, and so many more. You know who you are and we are grateful to you all!

We are also grateful to the National Fibromyalgia Association, The CFIDS Association and the Whittemore Peterson Institute for posting on their Facebook pages asking their fans to vote for P.A.N.D.O.R.A. too.

BUT if we do not get a significant spike on the number of daily votes for our organization, we will lose the opportunity to receive a grant in the amount of $20,000.00. While for some of the larger organizations this may be a drop in the bucket, for us it 95% of an entire year's budget. It is priceless!

Look at what we can do with $20,000.00.
1) Pay our phones, web site hosting, newsletters costs for 2010. Get a new computer that can handle new technology specifically for non-profits including a new efficient donor data base.
2) Get a new updated web site that will continue to inform you and share what we do best.
3) Hire a part-time person to help us in the office to respond to an ever growing number of inquiries & assistance for individuals stricken with NEIDS.
4) Continuing to position our organization and our strategical partners, so we can move on with our main project: The establishment of the NEI Center(TM), in New Jersey. It will take time and money to get this off the ground.
4) Travel to DC to represent you at the CFSAC meetings, Pain Medical Conferences and at the IACFS-ME conference in Ottawa next year.
5) Collaborate with other organizations through our micro-grants for medical students, educational conferences and advocacy/lobbying efforts in the U.S. and abroad.
6) Expand the Quality of Life Advocate Program: Patient Advocates helping others and "paying forward".
7) Expand the Advocate Extraordinaire Program for PANDORA and the NEI Center(TM)
8) Cost of educational brochures (art work, printing and mailing)
9) Support of empowerment groups in Florida and beyond.
10) Provide support to parents with children stricken with NEIDs.
10) Strengthen an organization that is patient-driven and physician approved.

if you haven't voted yet, we will run the risk of losing our current rankings and end up with NOTHING.

Often I hear that no one cares about our community. That the lack of respect, lack of money for research & patient treatment, and lack of awareness for the plight of millions is the norm. Well, here with Chase Community Giving we have the PERFECT OPPORTUNITY to get all of the 3 major concerns we all have in one swoop. As a matter of fact with the number of individuals stricken with CFS-ME and fibromyalgia, our organization could have been on the top 5, competing for the $250,000.00 and $100,000.00 grants.

Make sure you Vote for PANDORA today and for the other organizations that too share a similar mission with us. We cannot afford to miss this wonderful opportunity.

damn, the gap should be at least 50 to 75 votes, for the last day. We can expect a final sprint from the causes behind us.

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Although of course we could sprint too. PANDORA covers so many conditions it should have a good chance if groups can be mobilised.

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But you are probably right. If people like us who are pushing are to be able to relax on the last day, PANDORA need to be that far ahead (although it might need to be more to be able to relax!).
I almost certainly won't be on the internet so I won't be worrying too much if I should be doing more!

I don't have a facebook account... but know someone else's password!! Bwah-ha-ha-hah!

I probably shouldn't also send it to all of their friends though. Thanks for letting me know about this - the fact that the mailing list is rarely used means I tend to do what it says, rather than the ones which send out all the time and just get ignored.

However, I'm still not confident. A lot of effort was put into the last 12 hours or so for PANDORA.

The base level of 200th went up by 46 and I think there will need to be a lot of work to get PANDORA close to that amount each time. If you look back, PANDORA has only been going up by much smaller amounts than 46 in recent times apart from the latest.

I don't have a facebook account... but know someone else's password!! Bwah-ha-ha-hah!

I probably shouldn't also send it to all of their friends though. Thanks for letting me know about this - the fact that the mailing list is rarely used means I tend to do what it says, rather than the ones which send out all the time and just get ignored.

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Hi esther

Its great that you know the password of someone. if I can ask you make also your own facebook account. Maybe you will not use it but there are always CFS actions like this where you need to have facebook. I dont use it neither - just in the case like this. it takes maybe 5 minutes to have it. Like this you could earn for us also 4 votes. If you vote for 5 organisations you get one gift vote which you can send to someone else and he can send you one gift vote back (normally you have 20 votes but you can vote for one organisation only once and once with gift vote). so please if you can do it - do it, there are still some more days and we will need every vote - some strong organisation come every day from behind and we can easily lose the top 200.
if you need some instractions here is a short video:http://www.forums.aboutmecfs.org/sh...P.A.N.D.O.R.A.-NEW-SHORTER-VIDEO-NEW-CAMPAIGN.

It was also easy to copy and paste the other organizations into the search and then vote. I am going to list them below again because there were a few typos which I corrected. Thank you to Beesknees for originally compiled these. It would be great if Cort could list them on the explanation page because it makes it so easy. It probably took a total of ten minutes out of my day to vote for twenty. I hope everyone does this in the next few days.

the last day we lost compare to the 200 th place 40 votes. Now the gap is 103 votes. The dead line is in 4 days and 5 hours. If it will continue like this we will not manage it. so please everyone who can do it try to get more votes. its possible - I ennoyed my friends and I got at least 20 points. This 20 000 dollars are really important for PANDORA. Its 95 % of their budget for 1 year - they could doubled their activities.

OT: Does anyone else think that this is a crazy way for money to be handed out? Any little organisation could potentially get $20,000 for having a rather small number of facebook votes. Surely loads of nutty religious sects or underground cults should be taking advantage of this? If 4chan got hold on to this the top charities would all be utterly bizarre - (maybe we should ask them to fix it for CFS ones?)

esther, i dont like it neither. a lot of good organisations are fighting about money. especially when the rules are not 100 % good and there are so many possibilities how to cheat. but do we have another possibility? with such a small financial support of CFS we have to take every possibility. if you hear that maybe one of the biggest CFS support institution PANDORA has yearly budget around 20 - 25 000 dollars - you would like to cry. the situation is really bad and what can they do with such a small budget? hopefully, they will get this grant and then they can doppelt their activities.

Thank god there are not lots of "Facebook Appreciation"-type charities or something similar or they'd be up there as well!
I've talked to some people and to them Facebook is the internet. I prefer specialist forums like this myself where more indepth discussions tend to occur.